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Book Research:Living with Disability, Mental or Physical.

As someone who suffers with my mental health, since my teens and probably earlier. I've been toying with the idea for a long time of writing a book along the lines of the subject title.

I know from my own experience how difficult my condition has made my life and the very dark days I've experienced and still do.

While I would not say this about myself, I have often been struck by the courage shown by those, living with a disability be it mental or physical, be they born with it or struck down at a point in life by an accident or perhaps contracting an illness or even an operation that went badly wrong. And very often wondered what gives them the strength to carry on under such severe restrictions to a "normal" life.

I was particularly struck and touched by a blog I read last night, by someone I know who suffers. Their candour and eloquence in their writing, the courage they show just to simply exist, really brought their struggle to the fore, I also know that struggle very well.

There was also a person I often used to see in the street, I didn't know them and haven't seen them for a long while but they were wheelchair bound because they didn't have arms or legs but I never saw them without a smile on their face and they always appeared not to have a care in the world. I'm sure it wasn't necessarily like what I imagined but again the courage to continue under such trying conditions.

Sadly I know there have been many who have lost their personal battle and taken their own lives. A very real tragedy and something many people don't understand but how could you, if you've never had that experience yourself?

So, Is it faith, spirituality, family, children, friends or does something else come into play, something the individual didn't know they possessed, that gives them the strength to carry on?

I've never written a book before, so not only would this be a new and very challenging venture for me, I'm sure it would be the same for anyone willing to collaborate with me.

The book would be in the form of a series of interviews with people who are willing to share their experience good and bad, warts and all. While I don't specifically want to focus on the dark times, I do think they need to be told, to bring the point home but of course it would be good to have a happy conclusion, if that's possible under the circumstances but not necessarily. We all have to deal with our struggles the best we can.

I hadn't envisaged the stories being anonymous because of course one of the stories would be my own but am willing to consider it, if that's what the consensus wants, though obviously I'd have to wave my own?

Having said that, as I've spent most of my working life as a professional Photographer, I would like to photograph individuals and for their picture to accompany their story. Again having said that, if people are worried about anonymity, the pictures perhaps could be shown as a collage, so that there wouldn't be a connection with the individual.

If this project has any mileage, oops I nearly said legs, its not going to be something that could be completed quickly, or at least I don't think it would, it may well take a couple of years, so you'd have to be prepared to be in it for the long haul.

Of course those willing to contribute, all discussions/interviews would be in the strictest confidence and nothing would be published without your prior consent.

If you wish to collaborate with me on this project, please send me a direct message, I would be eternally grateful.

Finally for those who have already been brave enough to expose themselves on this forum, in other posts on this and similar subjects, I congratulate and salute your bravery and I hope you're all doing well?

Thank you for reading.

Nitram (appropriate pseudonym;)but as most of you I'm sure know, it's martin)

Ps. I apologise if anyone finds this post or my intentions offensive in any way.

Comments

  • We have talked about this a great deal M , my wife and various medical types, I acquired my brain injury in 09 and my recovery has amazed many, I meat many less fortunate people at the head way group I attend and most have incredible histories, although there are many books on this subject it appears very difficult to word with the correct feeling, good luck with your project?
  • Sorry to hear about your injury,jonseventyfive but glad your recovery has amazed many and will continue to do so.

    Thanks for your reply and I wish you all the best.
  • Thanks for your reply AFKABartram and thanks for sharing something of your own life and immediate family and friends situations.

    I have put the idea to someone and have been asked to put a few chapters together, to get a feel for how the book will pan out.

    I think it will take the form of the human condition and the will to succeed against the odds and I also believe it could be a cathartic experience, not only for me but those willing to collaborate.

    While I realise there is much more talk and exposure around the subject of disability and mental health. I'm also aware of those that I've talked too, that some still feel marginalised and neglected by a society, that often is only willing to acknowledge, celebrity, the rich and famous and yet some of the most rich and rewarding stories are those of people, who have succeeded and overcome terrible adversity.

    Thanks for your reply once again.
  • A good way to do this perhaps would be to look at the books Studs Terkel wrote. Vox pops around an issue, looking at all sides of the issue(s).
  • Hi @sillav nitram

    Very interesting post mate. Not really got anything to contribute to your project other than to wish you the best of luck. Don't know what research you have done but stories of people overcoming adversity or giving an insight into the reality of their condition I'd suspect is not an uncovered topic, so I'd suggest before getting too into it trying to determine what will be your niche, your angle, and then establishing if there is likely to be any publisher interest / market in that. If the primary objective though is to put a project together as a largely cathartic experience for yourself, then that doesn't matter so much.

    As a father of a special needs child, with friends and colleagues with disabilities, or children with various physical / mental disabilities I probably have a slightly greater than average insight and understanding into the lives of people impacted by such situations. I am constantly humbled and never short of complete admiration for the attitude and way people deal with challenges and cope so 'well'. I guess there's the general aspect in life of 'you don't know how strong you can be until you have to be', but I never fail to find other people inspiring, equally from those who work or volunteer in those sectors and do amazing jobs.

    I also appreciate that for some people, simply putting clothes on and walking to the nearest shop can be just as much a mental challenge to them as running a marathon is a physical challenge to others.

    Rambling here, good luck

    You just keep on rambling, Danny - a very insightful and thoughtful post.
  • iainment said:

    A good way to do this perhaps would be to look at the books Studs Terkel wrote. Vox pops around an issue, looking at all sides of the issue(s).

    Thanks iainment, I'll take a look.
  • My wife is prominent in the "Service User" movement. Without going into details, I'd like to do more for you, but all I can do at the moment is pass on some useful links:

    http://www.nsun.org.uk/

    https://www.disabilityrightsuk.org/
  • Saga Lout said:

    My wife is prominent in the "Service User" movement. Without going into details, I'd like to do more for you, but all I can do at the moment is pass on some useful links:

    http://www.nsun.org.uk/

    https://www.disabilityrightsuk.org/

    Thanks for that Saga.
  • edited June 2017
    Sounds like a cracking idea, silav. I'd be interested in reading it when you're done, and I definitely feel like there's a need for that kind of discussion - a more blunt and realistic look at the topic.

    Without cracking out the whole story, I was diagnosed with a mental illness at 18. The prognosis was going to be a lifetime of anti-psychotics, mood stabilisers and various PRN/"take when needed" bits. Complete with biannual blood work and ECGs.

    The most frustrating part of that ordeal? The ability of every fecker around me to channel positivity and direct it at me!

    I felt as though far from being supportive, which I did intermittently recognise they were trying to be, they were actually wilfully ignorant of just how destroyed my life was before it had even begun.

    - I was barred from entering the only career I'd ever considered (the military);

    - I felt given up on, as though some of those employed to help me thought the best outcome would be a halfway house style affair and no real job prospects;

    - I was under no illusion that a lifetime of meds and weight gain was going to trim a hefty chunk off my life;

    - I knew medication wasn't miraculous, and whilst those around me spoke about it as though it was, I felt the excruciating effects of it on every aspect of my life. (an 18 year old who can't drink, can't get it up and feels numb to most emotions?!)

    There's an element of dark humour to the situation looking back to what I can truly remember of it.

    Ultimately I tried to take my own life, September 20th that year; and strangely this is the one topic that I don't think it's possible to really talk about.

    The thoughts often lurk in the brain, but this occasion it was very much a "bugger it, this is shit and everything has gone tits up" - and off I went. When I awoke a few days later in hospital, my life had changed entirely - and from that day onwards my head was screwed on and I made progress month on month.

    There's dark humour to be had throughout my recollections of the entire time if I'm entirely honest with you. Not only in a "if you don't laugh you cry" way, but in a legitimately funny way.

    Personally I see a lot of inspiring stories, and I see lots of talk about initial reactions - but I'm not sure if I've ever seen or read an account of the struggle in between. That "what the absolute f*ck has happened, everything has gone tits up here." realisation.
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  • Hello LuckyReds, sorry for the lateness in my reply, it been a long couple of days.

    Thanks for your willingness to share a part of your story and to be so open. It's so important to be able to talk, without feeling ashamed and it certainly doesn't sound like you are.

    And your story seems to have a positive outcome, which is brilliant and I agree very much about the dark humour. I think it's essential to have the ability to laugh, otherwise the other side to that, is often unthinkable.

    I hope this book does have a chance to get off the ground but of course it depends entirely on people being willing and being comfortable in telling their story.

    Your story sounds very interesting and maybe you might give it some thought but of course that's entirely your decision.

    Thanks again in replying and I wish you continued recovery and good health.
  • If you want some perspective from a parent bringing up a disabled child back in what now seems like the dark ages (1980's) Id be happy to add some input. To be honest Ive often thought of writing about the experience myself as we didn't have a clue about my child's condition until she was born. There was little to no information on hand in those days. The impact it had on everyone connected to the family, how it affected my other kids, and my relationship with my then wife and ultimately how it shaped my daughter's life doesnt make a fairy tale Im afraid, quite the opposite.
  • Thanks for your reply, TEL.

    That's also an interesting angle, from the carers perspective and could be something worth pursuing.

    Maybe we could have a chat?
  • Thanks for your reply, TEL.

    That's also an interesting angle, from the carers perspective and could be something worth pursuing.

    Maybe we could have a chat?

    I'm in Australia. Happy to have chat via pm or email
  • Do you have Skype, TEL?
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